Terrible, terrible, terrible thing

[yirol]

My beautiful Dad has just been diagnosed with non-small cell Bronchoalveolar Carcinoma (BAC), stage IV, with small lesions on lower vetebrae, abdomen and perhaps liver. Tumors in both lungs. Brain scan is completely clear. Spent three weeks in hospital while doctor's checked for T.B., pnenonmia and benign lung scarring. THREE WEEKS OF WAITING AND STRANGE COMMUNICATION (We're currently at a general teaching hospital which seems to be suffering from "group think"). Day of official diagnosis, the hospital oncologist sent a young intern to my Dad's room who basically told him to "choose a pain killer and go home."

However, my Dad wants to fight. We are in the Canadian national health insurance plan and feel that we're getting the run around. Very poor communication and a lot of waiting for the single oncologist that services the entire hospital to transfer my Dad to the Lung Clinic at Princess Margaret's Hospital in Toronto. Current doctor suggests starting my Dad on a round of Iressa, without chemo until he can be transferred. Time is of the essence. Should we move my Dad to a private clinic in the States, should we wait a week or more for transfer? Should we start Iressa without Chemo in the current general hospital? It all sounds a bit too random to me and feels like the doctors are stalling because they've already made the decision that my Dad should just go back to his apartment and die.

We are on borrowed time here and we are doing our best to accept it. Not expecting a cure, just a fighting chance for treatment. More than anything, my Dad wants to at least get well enough to travel back home (he's from Africa) and spend the rest of his days there. This is all so sad and new for me, but I need all the information I can get to help him fight for as long as he wants to.

Can anyone help? Anyone?! Anyone?!!

[Welthy]

Sorry about your father's diagnosis. Please hold onto hope as BAC tends to be one of the slowest growing lung cancers. It can be treated and held at bay for long periods of time! (Oh, and three weeks was the same time frame for all the testing for my husband's diagnosis too -- so don't feel badly about that.)

I don't know about Iressa as first line treatment because it was tossed in the U.S. in favor of Tarceva, which is similar, but more effective. There are many treatment options available for your Dad.

If coming to the U.S. for a second opinion is an option (which I know of some Canadians who have done this), then hit one of the major cancer centers in the North, like Mayo Clinic in MN or Memorial Sloan-Kettering in NY.

Please check out Dr. West's site at Onctalk.com for disussion forums and his blogs on LC. He is a Lung Cancer Oncologist at the Swedish Cancer Inst. in Seattle and offers his wonderful website for everyone! Much information can be found there that will give you comfort and support.

Best wishes,

Welthy

[barbara5452]

Dont take want they are telling you there is much hope for your dad, get to another hospital or cancer treatment center. Best of luck.

[yirol]

Thank you so much Welthy! Your supportive and encouraging email means the world to me. My Dad was diagnosed on May 1, so this is all a new world to us. (In my original post, I should have said Iressa without Radiation rather than Iressa without Chemo).

Do you have any idea how people have funded consultations and/or treatments in the States? We are seriously considering this option, but my Dad only has the basic Canadian health insurance plan with no supplemental private insurance. His older children are considering paying out of pocket or raising the money through some other means, but we're not sure this is even possible. Hope this isn't an ignorant question, but do any clinical trials accept patients "pro bono"?

Best wishes to you and your husband. My prayers are with you!

Yirol

[raneyf]

I would call the finance offices of the centers you'd be interested in going to. Explain the Canadian insurance thing and ask them what others in your situation do. Sorry, I don't have any answers, but that would probably tell you what you're looking at the fastest.

[Welthy]

Yirol,

I'll pm you. You will find your private mail at the top of the page under "my mail".

Also, watch your post, because I'm sure there are others who will respond that may know more then I do about treatment in the U.S.

Welthy

[Ry]

My husband did very well on Iressa (see my profile) and there is a member here that is still on it and doing well. If your dad is one of the patients that respond to it, it can be a miracle drug. So I would start it until you get another opinion. Tarceva is now prescribed here rather than Iressa (but patients doing well on Iressa can stay on it).

[fillise]

Yirol,

Just wanted you to know that I'm thinking about you and your Dad. I really don't know anything about the Canadian Health System, so I can't be of much help there. I do know that people have had good results on Iressa even though it is no longer used (with exceptions) in the US.

Susan

[hockeyma]

Yirol,

I am in Ontario also, even though my husband's battle was not successful my goal is now to help others local to me to get the best treatment available. I am not sure where you are located but I am assuming close to Toronto. We are an hour and a half north of Toronto and our hospital had only one real oncologist also. We were told that Gerald could not have radiation. He started chemo immediately which was good - he had alot of cancer in him to begin with - and that probably bought him some time. However....after I pushed some issues we got referral to Sunnybrook - who also have a lung radiologist and a lung oncologist - each have a resident doctor working with them and their own nurse. They were excellent in my opinion. They are also easier to get to than Princess Margaret. Be careful of the drugs that your dad is put on. Once Gerald got the referal to Sunnybrook we discovered that radiation in some areas was an option but he would have to wait 3 weeks for the chemo drug to clear from his system. There are some chemo's that can be done at the same time as radiation. If you can't get into Princess Margaret - try Sunnybrook - their website does say that they will see people quickly...how true that is I don't know. I also know that there is a centre in Buffalo that people go to - but apparently it is between $3-$5 thousand dollars....to see if there is anything else that can be done. Another hospital should know of this. Gerald couldn't travel because he had thrombosis in his juglar vein and vena cava vein when diagnosed. I don't know much about Iressa - I didn't even ask as in the states I know it has been replaced by Tarceva. Tarceva is in Canada a third line option and to take before that you have to have private coverage - which we did - so Gerald took that as a second line. So double check that he would be covered for Iressa by the government. I also want you to make sure that you check into the available home care that is free and covered by the government with 4th stage lung cancer. Usually called a "community care access program" - your dad should qualify for a nurse to come in and check him a few days a week - ie blood pressure, temperature and general well being. As well if he ever needs oxygen - stage 4 with metastes does usually qualify for free. Also you can get a nutritionist and a physiotherapist at some point covered to come to your home also. If Gerald had been able to travel we had considered going to the Mayo clinic. One of the head oncology nurses at our local hospital worked at Sunnybrook in oncology for quite some time and she told us that often people would go over the border and come back with the same treatment plan and reccommendation....but you never know....I guess that is one of those would have, should have, could have things. Gerald and I had alot of hope but he had too much and things never worked out. Sorry for the long speech....but I want to help if at all possible and feel free to private message me with any and all questions that you may have. Heather

[alexan]

Yirol, ask for a 2nd opinion, or a different Hospital. There are a lot of diferent tratments.Have hope.

Best of luck & prayers

bucky

[yirol]

Hello Hockeyma,

Thanks so much for your response and help. My blessings to you, your family and your husband Gerald. That picture of him smiling is so wonderful, it makes me think that even with all the ugliness of cancer, and because he had someone like you in his life, he was and is the winner afterall.

Life on this end is so rough. I'm watching my Dad deteriorate everyday and the politics and inertia at Saint Michael's where he is currently is absolutely maddening.

We got a referral to PMH lung clinic and started a treatment program of Tarceva as a first-line treatment because the doctor said my Dad was too weak for chemo. She also recommended that the fluid in his lungs be drain through an ultra-sound guided needle. However, when we got back to Saint Michael's, the doctors and interns who rotate among floors and patients seemed to only want to discuss discharge. They said that they were "not aware" of any fluid in the lungs (yeah right!) and that even if there was fluid, they're not sure they would take that route anyway. So, we're sitting there tired, overwhelmed, confused, angry and completely bewildered by the cross-communication. It's as if no one wants to assume responsibility for my Dad as their primary patient, while simultaneously blocking others from stepping up and doing so. I just don't know what to do! I called Stoneybrook, but no answer. And I just don't think we have time to waste in the bureaucratic shuffle. This is so, so painful.

My Dad's symptoms are getting worse. It's really the mucous build-up and his inability to keep food down because of it. We have an appointment in 3 weeks at PMH to see if the Tarceva is working (was initially supposed to be in 2 weeks but because of the "holiday," they made it 3 weeks...as if cancer takes a holiday). Until then, we are praying that my Dad can keep food down and rebuild his strength enough to start chemo in case the Tarceva doesn't work. But again, we are just losing too much precious time, and I'm not sure what to do to make the hospitals and doctors listen short of standing in the lobbies and screaming my head off (probably not a productive thing, huh?).

Please pray for my Dad. I don't want him to suffer, and I want to know that I fought the best fight I could fight for him. He would do no less for me.

Again, thanks for your wonderful response to me. It's heartwarming to see all of the sharing and communication and sincerity that exists on these boards, especially in the absence of this kind of humanity in many hospital staff.

God bless,

Yirol

[RandyW]

Prayers Go up and Blessings Come down!! Get to a good facility, Find a Oncologist that will fight not just say," pick a pain pill and go home!!!" Fight for Tarceva. Iressa was found to work well in oriental Women who do not smoke. Was dropped in US after 2 months and very rarely used now. try for Tarceva, at the least. PM if Can help with anything at all. Saying Prayers for everyone!!!